Posts: 8

Topic: And now... it's on for Chemo!

It is a beautiful day in Sarasota. Temperature 78 deg F, fluffy clouds in a blue sky, light breeze. Shhh! Don't tell anyone!

After 6+ months of elevated bilirubin, I learned today that I'm down to 2.2 - low enough to start chemo. And not a moment too soon. I've metastasized to both lobes and to the abdominal lining, maybe more. I'm ready to start! Scheduled for first dose Jan 30th, right after I finish my antibiotic regimen for the infection of last week. FWIW, I'm done with the Therasphere trial, it didn't work for me.

I've been following with interest Derin's story, regarding what chemo to use. My Onc is also being very cautious and will start me only on Gemzar at first to see how I tolerate. We can't let the bilirubin rise. Derin, I emailed you but maybe it got lost. Where are you going here for treatment? I'm driving up to Moffitt - one hour each way, but once initial dosage and followup is done I can get the infusions locally.

Following the recommendations of several on this list, I've decided to get a port. I figure, "Why wait?" I've been a blood donor for 30 years and now I'm getting stuck and IV'd weekly, sometimes daily. It's getting harder some days to get a good line. The phlebotomysts (sp?) are great at Moffitt but the clinical nurses don't always stick me with the same ease. I can see the scarring and am tired of putting up with "fishing". And has anyone else noticed how veins will roll when you lose confidence with the nurse's needle stick?

Had my bilirubin not gone down, I was given one other option (other than palliative). Moffitt is part of an NCI Phase 1 study of the effectiveness of belinostat for patients with hepatic dysfunction. I'll post that info on the Alternative Treatments board.

Re: And now... it's on for Chemo!

YEA, Michael, this is good news! Isn't it just awful to have to wish Chemo on anyone? Best of luck on the 30th and I know you will keep us up to date! BTW, it's 70 in Phoenix with sunny skies and a visit from a Grandson who left a blizzard in Milwaukee!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: And now... it's on for Chemo!

Michael and Lainy...I feel cheated. Last night's temperatures dropped to 22 F - this is Northern California - we are supposed to be living in the Golden State. Michael - great news on the drop of the bilirubin; the antibiotics did the job. I agree, the port eliminates poking, missing, prodding and should be accessed without causing any pain. Enjoy your time off. All my best wishes,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: And now... it's on for Chemo!

Hi Michael,

Thats great news on your bili levels, thanks for sharing with us all. You are indeed ready to start and I hope that all goes well on the 30th with that, plesae let us know how that goes for you. And as far as your 78.F goes, enjoy that! We certainly ain't getting that around here right now, or in summer sometimes!! And Marion, 22F overnight for you?? Awwww.....I feel for you, honestly, I really do! Ha! Sorry I couldn't resist!!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: And now... it's on for Chemo!

Michael,Got your email, planned on calling towards the end of the week since I didn't know when you would officially be 'out' of the hospital. Sorry to hear about the spread. To answer your questions, I had the first dose of Gemzar Friday and have not taken anything since for nausea or anything. No real side effects to speak of yet. I have been to the gym on Monday and yesterday so I'm still doing my typical routine. I have treatment at Florida Cancer Specialists, on Cattlemen north of Fruitville right behind Sam's Club. Dr. Richard Buck is my oncologist, and he is fantastic. Never rushes you, answers all of your questions and is overall just a nice guy too! You can tell he cares and is very serious about what he does. He is in contact with Sloan Kettering about my plan and has no problem consulting with other Oncologists either (I would expect that he would have no issues with talking to Moffitt either).

I do Gemzar this Friday, off next, and then we do the double with Gemzar and Cisplatin which I'm told takes a LOT longer... Talk to you soon.Derin

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: And now... it's on for Chemo!

HamptonSarasota wrote:

I do Gemzar this Friday, off next, and then we do the double with Gemzar and Cisplatin which I'm told takes a LOT longer... Talk to you soon.Derin

Cisplatin does take a lot longer! My Gemzar is about 30 min. The cisplatin takes a little over an hour. Plus I get potassium and magnesium they also take about an hour each. Glad I only go every 14 days! LOL

~Tiffany~ 31 years young Fighting CC since 10-27-2011Wife to Brian; Mommy to Carter (8) and Madison (4)http://tiffanyschwantes.wordpress.com/Liver transplant 7-9-2013

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